We are proud to announce the launch of a new series of in conversation pieces hosted by the Directorate of Equality, Diversity and Inclusion (EDI). ‘Let’s talk’ encourages members of our diverse University community to have an open and honest discussion about topics right across EDI.
Banji Adewumi, Director of Equality, Diversity and Inclusion said “Our ‘Let’s talk’ series aims to prompt further conversations to help overcome many of the barriers that colleagues face in the workplace. I invite you to get involved in the discussion and learn more about our diverse University community’s lived experience of belonging.”
The series will include blogs, videos, podcasts, recommended reading and more to cover a range of topics spanning all our Equality groups.
Let’s Talk Disability – The Importance of Networks
Episode 4 of Let's Talk Disability, hosted by Professor Jackie Carter, EDI Academic Lead for Disability, is a conversation between Professor Dame Nancy Rothwell, President and Vice Chancellor of the University of Manchester and Hamied Haroon, member of the Faculty of Biology, Medicine and Health and Chair of the National Association of Disabled Staff Networks.
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JACKIE: Hello, my name's Jackie Carter. I'm the EDI Disability Academic Lead at the University of Manchester and I've set up a series of in conversation pieces called Let's Talk Disability.
The reason for this is that I want people who have a disability and who work and study at the University of Manchester to have the opportunity to share what their lived experience, their everyday experience is with somebody in a position of influence, a senior leader at the University. So each episode will feature two guests and each of those guests will have a conversation about what it means to have a disability at the University of Manchester. And at the end of the conversation each will commit to one action, we're calling them one things where they will take away something from the conversation that they've had and do something with it. I hope you enjoy listening and we'll make of course the transcripts available for everybody. Thank you.
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[MUSIC]
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JACKIE: Okay, welcome to episode four of the Let's Talk Disability series.
I'm Jackie Carter. I'm the EDI Disability Academic Lead for the University of Manchester, and I have two guests in the studio with me today who are going to introduce themselves and we're going to have a conversation about the lived experience of disability at the University of Manchester. So Hamied, can I start by asking you to introduce yourself please?
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HAMIED: Well hello Jackie and Nancy. So it's wonderful to be here. My name is Hamied Haroon and I'm a research fellow in the Faculty of Biology, Medicine and Health in the School of Health Sciences. I work on biomedical MR imaging. I love the subject I do.
I've always been disabled all of my life and I'm a proud Mancunian. I've always lived in Manchester. I love this city. So I started life as a disabled child in a special school just full of disabled children surrounded by that environment and not really seeing other kids who were non-disabled around me. It was just a disability but we learned how to make the best of being disabled and the strength that that gave us for the the rest of life. But it was only when I got that chance, lucky chance, to go to the only mainstream high school that was accessible in Manchester at the time did I discover science and brilliant programs. Nancy you might remember these, Tomorrow's World, Star Trek, great things like that on TV really kind of built that passion, that drive towards science for me and yeah so I found my path. Over to you Nancy.
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NANCY: Thanks so thank you. I'm Nancy Rothwell. I'm President and Vice Chancellor of the University. A post I've held for 14 years but still a scientist at heart in the same faculty as Hamied in the Faculty of Biology Medicine and Health and still dip in and out of research which is on stroke and dementia and brain injury.
I do want to say first of all, thank you so much both to Jackie and to Hamied because I believe you were the founder of the disabled network which has gone from strength to strength and I think now is gaining real recognition.
People are starting to think about what disability means in a way that we probably didn't even a few years ago so I wanted to say a big thank you to both of you.
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JACKIE: Brilliant thank you so much Nancy and that really is the purpose of this recorded series you know, to hear the voices of the lived experience, the everyday experience of disabled staff and postgraduate research students in the first instance and find out not just what the challenges are
because we can talk about those but also what the strength of having a diverse community at the University of Manchester is.
So Hamied, Nancy's mentioned the disabled staff network I don't know if that's a good starting point for you to say a bit more about what you've done at Manchester and what that has led to.
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HAMIED: So that's a pretty awesome starting point. So yeah when I finished my PhD and I became a member of staff I was really lucky to fall into a research position at that time.
So becoming a member of staff all the support I had from DASS at that time was only for disabled students so I lost all of that as a member of staff it all just disappeared. So we were brought together those members of staff who had I hate this word but declared that we were disabled yeah
because I don't believe we should we should have to declare or disclose it sounds like we're criminals of some kind to do that but all the staff who had declared were brought together for the disability equality statement or scheme that the university had to put together at that time and so there's a small group of us and that's where we started our network, the disabled staff network. And the first thing we campaigned for was to have support for disabled staff alongside what was already there.
We didn't want it to be in HR, we didn't want it to be anything to do with occupational health although they're lovely people but we wanted something that that sat alongside the expertise that was already there in the university so I had a one-to-one meeting with your predecessor Professor Alan Gilbert and I was so nervous that day and I presented this SWOT analysis around the experiences of disabled staff and he got it that we really were that there was this gap in having support for disabled staff so very soon after that we had that put in place at the university, probably one of the first universities in the country to do that and that meant a great deal in terms of the university's
perspectives around disability and the change that that brought around for disabled staff and because of that so many more disabled staff actually if you like in inverted commas 'came out' and actually shared that they had that they were disabled that they were neurodivergent or they had some kind of long-term health conditions that impacted them on a day-to-day basis and the support that they needed they came out because there was a benefit to doing that and that was the support that the university provided.
So yeah it's been a great journey since then and as you might remember we had a national conference here Nancy.
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NANCY: I do remember.
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HAMIED: Back in 2014 it was but where we brought disabled staff together from across the country on the only sunny day in Manchester that year in the great Alan Turing building and yeah we launched our National Association of Disabled Staff Networks from there and we've been going from strength to strength from that all based on what we were doing here in Manchester.
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NANCY: Yeah it makes me feel very proud, although we still have a lot to do.
I remember Alan talking to us as the senior leadership team at the time about his conversation with you and that's when we changed DASS to include staff and actually we've just expanded it again not least thanks to the campaigning of Jackie and to have more of a focus on PGRs because that they felt a little bit left out, because they weren't, they didn't quite consider themselves as students but they weren't necessarily members of staff so that's expanded again. Interesting comment you made about 'declare' because there is still my sense among some people a stigma about saying I'm disabled.
I mean sometimes it is very obvious but sometimes it isn't obvious and people feel it might disadvantage them to say I have a disability so I think one of the things we have to do is give people confidence that they won't be disadvantaged by saying I have a disability and it was very interesting when I met with the PGRs that one of them said, well I can't see DASS because although I know I have a disability it hasn't been formally diagnosed and the head of DASS said no no no problem come and see us anyway it doesn't matter and they were quite surprised so clearly that from that meeting the key thing that came to me was, as is so often the case, communication is not as good as it could be we're not reaching enough people and so they're thinking I'm isolated, I'm alone, I'm struggling, they don't all know about the network. I'm sure there's many more who could join. They don't know about DASS they don't know about what can be done, but then communicating to others because several of them were saying what brilliant PhD supervisors they had but others saying but my PhD supervisor just doesn't really understand what it means to me and we need a bit more training so I think awareness and communication is a big thing that we need to step up.
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JACKIE: Yeah I'm so glad you picked that up because we on episode two I think, of the series we had the vice president for research Colette Fagan talking to Laura who's the co-chair of the disabled staff network but also the co-chair of the PGR disabled staff network disabled PGR network and one of the things that we picked up from that was about not just better communication but better information that can be given to PhD supervisors so already as a result of having those conversations and bringing that to your attention Nancy, but also to Colette we're starting to make changes in terms of what's delivered in the PGR supervisors toolkit and moreover we're sort of starting to spread the word more widely about what it means to have a disabled PGR student in terms of supervision so it feels like it's not just the communication but the uh it's hearts and minds as well isn't it?
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NANCY: And I think it's also demonstrating that that disability which affects people in very different ways sometimes profoundly, doesn't have to be a disadvantage. You know I'm very proud that one of our heads of school for many years was completely blind. I found that hard to imagine how you could do that but he did and he did a very good job and it was a great message to people you can be a top academic, a professor and a head of department and be fully blind and you know the people around him, well we knew him, helped him a lot and I met a student a few years ago who was remarkable she was blind and deaf and studying music and it was just and actually that's one of the reasons why we should celebrate having a high proportion of disabled people because it's humbling for the rest of us actually it makes us think my goodness I thought I had it tough but actually you know some of the hurdles people like you Hamied and others have overcome make you stop and think actually I've had it quite easy really so I think it's just good to to see people around who in spite of sometimes significant disability have achieved great things.
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HAMIED: Yeah I think that's so important in terms of being able to see yourself, seeing people who are disabled like yourself in those high high positions in those positions of influence. Like you said it was a head of department who was blind when I found out about found out about them and what they had accomplished I think it was in computer science.
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NANCY: It was well Robert Stevens.
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HAMIED: yeah I was just like amazed and that that's you know somebody of that that level was a disabled person so to be able to see that means a great deal to us and I think we need more role models we need that playing out in....
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NANCY: but it also makes people stop and think I remember when Robert was at a head of departments meeting once and there were slides and I suddenly thought oh my goodness we haven't sent slides through to Robert in advance. You know you just need to stop and think that had he got them in advance they would have been translated into braille and he could have seen them but of course he couldn't see any of them. And afterwards I had to write and apologise saying we should have remembered that and we didn't
because it's not at the forefront of your memory and then that's the minute I saw him I knew straight away that we'd made that mistake or just thinking about having a meeting in a building that isn't that accessible. I mean we learned from the PGR meeting that although I think we're within the law that
doesn't mean we're within what's really needed in terms of access, yeah some buildings are pretty hard.
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JACKIE: Do you have any thoughts on that in particular. I do have a question but I was I wondered if you wanted to respond to that so accessibility of estates
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HAMIED: So, yeah, some of the buildings Nancy, you know on our campus included some of our new buildings even you come to the entrance and already there's there's this feeling that you're. you're segregated from everybody else you go to a building you go to the entrance there's an entrance that everybody else can use and then there's a disabled access entrance on the side and often you are you are separated from everybody else yeah even if you're going along with your students or with colleagues and you're having a conversation and they can use that that you know for want of a better word the normal entrance and you've got to go around the side to a different entrance, you you are separated you lose that conversation you lose whatever is going on in that space. You you become excluded from that so it's um it's something that I feel very strongly about that the design of our buildings yes they meet the you know the minimum leave but actually we should be moving beyond that.
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NANCY: I have a question I should know the answer to this but on the design teams for buildings do we have any disabled staff or DASS members advising?
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HAMIED: Well, we're supposed to.
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NANCY: Okay.
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JACKIE: yeah we do have members of staff so um Kathy Bradley is one of those people that tries to get involved with all of the conversations but in terms of design and new buildings. In fact one of the things that Kathy and I've talked about is ensuring there is a disabled member of staff um in terms of the redesign of the Reynald building yeah instance. yes so yeah oh we know about redesign we're trying to get in on the conversation.
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NANCY: You know about this building now there's going to be redesigned so here's another one we need because you know I don't think it's anybody wanting to be difficult they just don't think in the same way I didn't think about Robert needing the slides in advance until it's too late or you turn up at a committee and you look around and you think there's 20 people on this committee and I'm the only woman. Don't can't tell you how many times I have to pull out and say this is not a very diverse appointments committee either in terms of ethnicity or or disability or even gender still and people go, oh my goodness and they're shocked when they they realise you know they've just overlooked it.
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JACKIE: So can I prompt you both to think about you we've talked a lot about um visible disabilities where it's clear that somebody has a disability but I'm really proud that the University of Manchester has adopted the Sunflower Lanyard scheme, which is all about hidden disabilities. So what do you think are the challenges for us and also what can we do to sort of better communicate what it means to have like myself I have hidden disabilities. You know I have a hearing impairment and I'm very dizzy all the time because of a neurological condition I had during lockdown. What can we do
for hidden disabilities and for those people who are neurodivergent and wouldn't necessarily want to share that they they have what's labelled a disability but might not want to sort of talk about that.
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NANCY: So um first of all I I I don't like the disabled non-disabled. For most of us there is a spectrum whether it's you know I'm like slight dizziness or severe dizziness or neurodiversity there's a whole spectrum of behaviors that that don't define you as 'I am disabled' so I think we have to get people to want to say, to feel they have an advantage by saying it. By wearing a lanyard and until they realise there's something that will help them why would they bother? Why would they why would they want to stand out and say put their hand up and say actually you know I've got I've got a problem um so so there's got to be something and that means other people recognizing it.
I mean I do wonder how many staff in the university would recognize that lanyard because I think quite a lot would not or not particularly see it because they just say oh they're nice flowers um you know so I think you know it is an awareness thing but unless we can demonstrate look if you wear that or if you tell us then help is available you don't have to take it if you don't want to but there will be no disadvantage to telling us and there could be advantages so I think approaching it from that individual's perspective as to what they could get out of it is probably a good way forwards.
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JACKIE: That's really wise. Hamied I was thinking you mentioned earlier the National Association for Disabled Staff Networks but you failed to say that you are the chair of that okay so I wonder if if there's anything that you can bring in in terms of your sort of wider experience you know thinking about disability across higher education that perhaps would benefit Manchester?
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HAMIED: Yes so in higher education and the the academic experience there's this whole kind of notion around what an ideal academic is meant to be yeah as you will know yourself.
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NANCY: oh yes
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HAMIED: So you're supposed you know you'll only succeed for example if you're white or you're a man or you have no caring responsibilities or you don't need to go to the toilet or you can conference anytime and you're available 24 hours a day. Basically you you have nothing else going on in your life except for for that academic kind of side of things. Also playing out there is the the social model of disability which is that it's not so this is something that really kind of liberated me if you like, is finding out about this idea around disability that actually. So the the medical model says that we are the problem, we need to be fixed, there's something wrong with us, we're abnormal, we're handicapped. I hate those words but actually the social model disability makes us think very differently that actually the problem is society not just in the physical barriers that we encounter but also in the stigma in those stereotypes the attitudes the negative things where people are just left out because communication as you said you know is is not in the right format, sign language that was not used by the government for instance during covid in the briefings that we had every day you know a whole section of society was excluded from those because of that so the social model of
disability is saying actually it's those things that make us disabled and so in that way we are disabled people which I I like am I am I kind of going ...
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JACKIE: No, no, that's great and I was wondering giving that you work across the sector, you're hosted at Manchester and you're very involved at Manchester but you have a sector wide perspective of disability because of your chair of the national association for disabled Staff Networks whether or not there's anything that um perhaps we missed a trick we need to do more of.
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NANCY: you know what can we learn from others.
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JACKIE: Manchester is now a leader in this are, we've got the disability confident leader status um we have amazing academic leads in all protected characteristic spaces but what could we be doing
in disability particularly that would help um even more amplify what we're doing now.
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HAMIED: so I think when it comes to EDI, equality, diversity and inclusion I think we're missing accessibility from the conversations and I think gender and race have these charter marks in the in the sector around Athena Swan, the race quality charter mark as Jackie just said that the disability confident scheme is something now universities are going for.
We have an award at this university and that's good to take that step but there's still a big gap when it comes to disability so whereas gender and race we're making some moves people might argue either way around that but because those charter marks are there universities have to show something in regard to gender and race whereas with disability I think we're lagging far behind and it also almost feels like in the EDI space disability is the poor cousin of EDI and it's usually like uh invisible down at the bottom of the pile of uh of things gender race usually taking the top.
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NANCY: so yeah so I mean that's interesting so we could specifically call for an organization I don't know who it would be to set up something akin to the race equality and the athena swan for disability awareness and and and you're right I mean these badges they are to some extent badges and you've got to be careful that they're not just something you do a lot of work and tick a box but it does make you think uh and and it does make you realise where there are gaps and it was very interesting talking to Rachel the lead for Athena and she was talking to our board people committee and obviously we got silver but within the first sentence she was saying yeah but we're already working on gold we've still got a long way to go now you don't have those steps for disability and I think that it is probably time that we we had something that we could work towards and and it has to be national otherwise it's not meaningful. It has to be something that everybody wants to do so who would we call on to set that up?
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JACKIE: Well I think Hamied might have some response to that because there is work taking place in this area.
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HAMIED: So the national association of disabled staff networks is a is a partner in a scheme that we're calling 'realising inclusion of disabled employees' so ride for short in higher education okay and so we have a group of very passionate individuals, excuse me, passionate individuals who want to formulate a way forward on equality for disabled people in higher education. Disabled staff alongside disabled students so there's something called the the disabled students commitment the universities are being asked to sign up to at the moment and there's the student mental health charter yes but those are very focused on students as the names suggest but for disabled staff again there's nothing right now so we are trying to formulate a kind of scheme, a framework but then trying to avoid the pitfalls of charter marks yeah.
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NANCY: yeah tick box exactly can be.
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HAMIED: where you don't just want tick boxes you know but you want real change for the people on the ground and we're hoping this will come through staff networks, disabled staff networks at universities through that mechanism but with real buy-in and leadership from senior leaders at those universities.
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NANCY: Oh yeah I want to pick up another interesting point you made. We often talk about EDI rather than EDIA, I was in um a school yesterday big school um and they referred all the time to EDIA and I think we need a slight shift in thinking because it isn't just access in terms of disability it's access for all sorts of reasons yeah I was talking to some first year students the other day and I said, they were talking about where they could go and study and they were all black students and uh for some reason and um they I said we can go and study in MECD. Oh I don't think we'd be allowed, so why not, of course you'd be allowed, everybody's allowed, it's open but you know is that sense 'not for me' so obviously disability is one but I think access we need to add on to EDI.
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JACKIE: I'm glad you said that nobody else has said that on this series and so it's really helpful to help move the conversation forward and to think about what we're not doing and also you've challenged us Nancy, thank you for that for thinking intersection intersectionally you know it's not just looking down a single lens.
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NANCY: no it's not.
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JACKIE: of course we're looking at disability today for the reasons that I've explained but everybody has multiple identities you know and it's about ensuring that we all have the best opportunity we can working or studying at the university of Manchester. I don't want to spend too much longer
talking about that but we have talked a lot about the challenges and some of the opportunities but are there any practical things do you think we could be doing to raise the issues about strength and celebrating you use the word celebrating which I really liked you know so we're not always thinking of this particular group of people as in need. You know what can we be doing to really raise a profile of amazing people at the university of Manchester who happen to be disabled?
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HAMIED: I think there's there's a number of ways I think just just remarking on what Nancy just said a moment ago about accessing it not just being about disabled people and I think that's absolutely right so things that we can improve in the experiences of disabled people would benefit everybody yeah so just like a building if you've got a staircase going into a building you're excluding so many disabled people from getting in that building as soon as you put a ramp on everybody can get into that building you're not excluding anyone so I think that's one thing to say. the other is in celebrating disabled people. I think we've got great opportunities throughout the year to do that we have, excuse me, we have disability pride month in in July I think it is. Which is actually based on the Americans with disabilities act that came out across the pond so we've kind of borrowed that from them.
We have the UK disability history month between November and December and then the International Day of Disabled People on the 3rd December. And we tried to take part in the purple light up so purple being the colour of disabled people and their contributions.
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NANCY: So that fits well doesn't it.
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HAMIED: exactly yeah So the university's chosen a good colour there so purple being a vibrant way of celebrating the contribution disabled people make which is often hidden we don't really see that and we don't celebrate it enough. How much disabled people do contribute, not just to the economy to society at large in so many ways and it's because of being disabled because of the the conditions because of our lived experiences that we enrich everybody's lives I think by by being around.
0:27:22.380 - 0:28:07.300
NANCY: So I mean you talked about the national sort of celebratory things but we have a lot of things within the university and I and I believe we need to just think a little harder about um people with disabilities so we have the make your difference awards, we have the teacher of the year awards, the researcher of the year awards, student of the year awards we ought to be thinking are the deserving cases not because they are disabled but the deserving cases and they are disabled just to sort of show that as I said before you can achieve great things um but takes a lot more effort of course and people would think my goodness they did that and they're disabled rather than they are disabled first and then they did that so I think we could think a bit harder about how we celebrate some, what some of the people have achieved.
0:28:07.300 - 0:28:09.426
JACKIE: Here here Nancy.
0:28:09.426 - 0:28:09.459
HAMIED: I'm so glad you said that.
0:28:09.459 - 0:28:29.720
JACKIE: You will not you will not be surprised to hear that I've been having conversations actually with the alumni office with regards to what happened to Laura Nuttall, as a disabled student who sadly passed away almost a year ago now and thinking about having perhaps some scholarships
for people who are dealing with adversity and still achieving.
0:28:29.720 - 0:29:24.960
NANCY: Yeah and and now is a good time because um either at the end of this year early next year we'll be launching our campaign I mean there was a big gift announced just this week um one of our alumni who's supporting care leavers yeah which is amazing because of course they leave the care home they've got nothing but to have something as a sort of scholarship program for disabled students or early career disabled staff to help them get along the way because I’m sure that for many disabled people there are a lot of extra costs actually as well so you know as I heard from the PGR's a lot of them can't go to conferences because they need to take carer with them, well that doubles the cost so how do we manage to get around that is that and I was just thinking afterwards is there another student or member of staff who would benefit from going to that conference who gets a free trip in return for supporting their disabled colleague so you know it's not just paying a carer it's paying somebody who will benefit from the trip as well.
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JACKIE: yeah yeah that's a wonderful place to almost draw a line under this conversation thank you so much so um we finished these conversations by each of you asking the other a question so Hamied I'm going to ask you first of all to ask Nancy and then she'll reciprocate and ask one to you.
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HAMIED: All right okay so uh Nancy what one thing will you reflect on as a result of this conversation.
0:29:47.300 - 0:30:31.960
NANCY: Actually I've got about three or four but um the key one is access I think and I don't just mean that in access to a building I mean it in access to everything but I also think um sorry I’m going to do two three quickly um I think getting a national charter mark is important. I think celebrating more of the achievements of our who happen to have made that achievement despite being disabled not because of. I think more celebration I think more telling people that you can be advantaged by letting others know that you have some form of disability um will be will be sorry I could go on there anyway lots.
0:30:31.960 - 0:30:38.457
JACKIE: We'll let you have the four now Hamied um sorry Nancy, would you like to ask your question?
0:30:38.457 - 0:30:41.080
NANCY: yeah yeah so so what would you what one thing would you come away with?
0:30:41.080 - 0:31:27.920
HAMIED: wow I I think uh I've been actually really happy with this conversation and actually the perspectives that you've brought as well Nancy. You've been a leader for our university for you know so many years and you've you've seen a lot of change I'm sure at this university all this place . Um you've led it yourself and you've seen others lead too so I think I've been really motivated and really happy to hear uh your perspective and I I hope your successor will take on all the the good stuff and uh drive that forwards as well for for equality for everybody and making this the the diverse and amazing place that this university is in this great and buzzing city.
0:31:27.920 - 0:31:53.080
NANCY: I'm sure he will actually we had conversations about it and it was interesting I met um quite a severely disabled member of staff who I won't name them but I'm sure you'll know them. They came from another university um and said to me they have never seen the level of support that he found here in previous universities um and I said yeah there's still more to do and he said yeah but honestly everything was done. You probably know who it is.
0:31:53.080 - 0:32:00.660
HAMIED: So I hope, I hope that means we might see a Stephen Hawking kind of appear from our very own University.
0:32:00.660 - 0:32:02.480
NANCY: Indeed wouldn't that be amazing?
0:32:02.480 - 0:32:16.440
JACKIE: Well that's a wonderful note on which to stop this now. I just want to thank both of you very much a really open, honest um provocative discussion today because I think we do need to sort of you know ask the difficult questions to move the conversation on so thank you Nancy, thank you Hamied.